Steatocystoma Multiplex cause, treatment and diet for preven

Keratin17 · Posted: 06/17/08 - 14:22 Post subject: steateocystoma Multiplex

I am making a myspace group for us all.

i was recently diagnosed. for the past 3 years some of my cysts get inflammed and i noticed the pattern is once a month. It is hormonal. I am taking evening primrose oil to stop inflammation.

You may want to try tea tree oil and read up on herbal medicine!

take a hot shower first to open up the pores and then use tea tree oil over the cysts. i used the anti bacterial tea tree oil soap and ntoiced the puss started to come out but this could take months but it is effective!

I am so adamant about finding a cure!

i have many on my chest, a few on my tailbone, forearms, neck, and one was successfully removed lower abdomen..basically the nurse at the dermatolgist squeezed it out with an instrument.

Keratin17 · Posted: 06/17/08 - 17:15 Post subject: steateocystoma Multiplex

http://groups.myspace.com/steatocystomamultiplex

charisma77 · Newbie Joined: 19 Jun 2008 Posts: 2

I have a had a similar condition that is supposedly linked to SM, called Vellus Hair Cysts. They started appearing when I hit puberty and then the only time that I get new ones is when I consume milk, ice cream, or milk chocolate. Strange, I know, but I think it has something to do with the hormones in the milk or perhaps the body not being able to process the type of fat that is in the products. I have had them removed by my dermatologist and I have just recently learned how to remove them on my own, which was a big relief. I'd say that I had about 100 of the cysts total on my body. They were mostly located on my abdomen and my rear end. Now I probably have about ten left. The key is to get the technique for removing them from your skin. And then treat the pigmentation problem that subsequently results from the excision. I personally use the lancets that diabetics use (it's a thin needle without a syringe, available at any drugstore). You do not want to stick the lancet into the center of the cyst, you want to pierce it from the side and lift up. I guess it's kind of hard to describe exactly how it works. What has worked for getting rid of the discoloration of the skin is something called a Jessner Peel. A doctor does not have to perform a jessner peel. An estetichian can do the peel. Just make sure that you get the peel done by someone that has experience with you specific skin type, so that you don't end up with blotchiness. After I had the peel, it was like I never had the condition.
So to sum things up, avoid any foods that you know trigger the cysts to appear (this may be different for everyone), have the cysts excised, and get rid of the uneven skin tone with skin peels. I hope this helps!

xpabhishek · Newbie Joined: 09 Jul 2008 Posts: 1

hey guys!

i'm from India... i jst got diagnosed with SM... i actually had it for quite some time like for the past 4/5 yrs...but i was officially diagnosed today...

i was readin all the posts...cudnt read all of them tho...

actually i'm a medical student...4th yr MBBS(equivalent to MD in US)....so i'll c if i can do some study on this...

the guy who diagnosed it jst said tht its still in a very initial stage..i mean i hav it for like 4/5 yrs...but the ones tht had appeared back then hadnt grown much tw....i went to him regardin this new one...which i'm not evn sure whether its new or not....

n he said tht if these grow larger then they can b excised....

i hav actually got like few of them... on my scrotum...n its definitely having some psychosexual effect Sad

...haha..

tho these r nothin really serious...but i kno jow it feels...n its worse for those who have it on exposed parts...

its jst nice to find some ppl whom i can relate to... thts it....

thanx...

Tommy Vercetti · Newbie Joined: 11 Jul 2008 Posts: 1

Hi guys,

i'm a 18 year old boy who lives in Belgium. I had SM since like 13, but it never really bothered me at that time. My mother and uncle have SM too. So i got it from my momma (lol) I have some cysts on and below my neck,some between my pecs, on my armpits, under my lower abs and upper legs and 2 on my scrotum (i had three but i could squeezy one out without havin much pain, i was so happy that day, 2 more to go..lol) A lot of them aren't really noticable but i can feel them under my skin. I don't have sooo many cysts. The cysts on my neck are the ones i'd like to have removed first because those are the ones u can see.

Like a year or two ago, a lot of cysts always got inflammed, like twice a month. That was usually under my armpits and could be very painful. I had to go to the derma very often so she could squeezy that dirt out of the inflammed cysts. In January i took antibiotics for like three months. I don't take them anymore and rarely got inflammed cysts after that. ALSO the cysts that I got removed (the inflammed ones, i never got other cysts removed YET) never came back for the most part.

One of my hobbies is bodybuilding/workin out. I think it may help stop more cysts from devlopping but i don't know.. Because of my sport i eat a lot and healthy.
I read about lasers so i'll ask a doctor for more info, because i want to get rid of those cysts!

WE NEED TO UNITE AND LET THE WORLD HEAR ABOUT THIS SKIN DISORDER OTHERWISE NOBODY WILL DO RESEARCH TO FIND A CURE.

Let's try to do everything we can to find a solution!! I don't really know where to start, i'm young. Maybe sending 100's of e-mails explaining what SM is etc.

I know it can be hard sometimes and very frustrating, but we need to do all we can to find a cure. Just enjoy life, most of the people around us don't even have a problem with this, the biggest part of the problem is in our head. Keep talkin about this disorder (it's NOT a disease!!!) and we need to keep in touch with eachother. Hopefully some more people who got SM find this forum. Have a nice summer;)

Mike

octobestorm · Newbie Joined: 03 Aug 2008 Posts: 1

Hi!

I'm 30 years old from the Philippines. Like most of you here I've been searching the internet how to get rid of my SM. I noticed the bumps when I was around 15 but was diagnosed by my dermatologist when I was in my early 20s. The Dr. gave me isotretinoin but it didn't work out. She aspirated some but it came back after few months. She later told me to live with it for the rest of my life. Sad

Guest · Guest

My wife's family has the disorder and my wife and I both think she has it. We have a 2 year son and was wondering if there is a test to see if he has it or not. And if he does could there be some sort of treatment we can start now to maybe prevent the cysts from developing?

charisma77 · Newbie Joined: 19 Jun 2008 Posts: 2

Octobestorm,
That crap that your doctor told you about having to live with it for the rest of your life is ridiculous! I have learned over the years that when doctors say things like that, it means that they don't know what the hell they are talking about! After years and years of going to different doctors who told me that I had to live with my vellus hair cyst condition, I finally found one that knew exactly how to remove them and the process for fading the marks left behind by the cysts. There are ways around everything in life and this skin condition is one of them. It just takes time and a really sharp lancet Smile

andreaed · Newbie Joined: 14 Jul 2007 Posts: 9

To Guest who is wondering if their 2 year old son will develop the condition - I am 37 years old and have had this condition since around 15. Wasn't diagnosed until I was about 30. Jus thought it was some sort of hormonal inbalance that was quite common. Very shocked to learn it was an extremely rare genetic disorder. I have been having carbon dioxide laser treatment for the last 5 years or so. I went for genetic counselling a few months back as none of my family have the condition. I have 2 daughters aged 8 and 9 and am obviously terrified I have passed it on. I asked about testing for the Keratin 17 gene mutation and they would not do it (I live in England). They said it would have to be done in America and the blood sample would not travel all that way in perfect condition and also it would cost around £1100 and therefore too expensive as it is not a life or death disease and and time will tell in any case whether I have passed it on. I was hoping and praying that I am a one off isolated case but the genetic counsellor said this won't be the case. I am either the first to develop the gene alteration or that one of my parents does have it but just did not develop it. We must all stick together with our ideas and research as there is no doubt that no-one else will be doing it for us.

SMulitplex · Newbie Joined: 24 May 2008 Posts: 2

Hi all,

I agreed we have to help ourselves to this problem,

1) Stop it from mutating / spreading within our body

2) Stop it from spreading on to our kids

However, no doctors would help us find a cure as this is non life threatening and they just see it as a cosmetic problem.

We have to create awareness around the world that there are people suffering the same condition as us. Hopefully some scienctist or researcher is kind enough to look into this area and develope a cure for it.

What do you guys think?

Steatocystoma Multiplex cause, treatment and diet for preven

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